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Thursday, May 22, 2014

Deep Brain Stimulation:: Going Deep

Here's the skinny on what's going to happen very soon in regard to the treatment of my Epilepsy. If you're just catching up here's a quick run through of where we've been::

*Diagnosed with Epilepsy at age 6

*Controlled and treated with medication until age 13.

*Taken off meds at age 13 with the assumption that I had Juvenile Myoclonic Epilepsy. You can read more about that Here if you are interested in understanding the condition further.

*Between the ages of 13-15 I started to become more 'aware' of my body and realized that something was wrong-I was still having seizures. By the time I was 15 I would go in spurts where I might have 5-6 seizures a day. The type of seizure I have can be described Here.

*At age 17 I went through a re-diagnosis process and was then put back on medication to control my seizures.

*I was controlled and treated with medication from age 17 until late April 2012 when pregnancy hormones started to kick in full swing and I started experiencing an increase in auras.

*All was going relatively well (with a few random weird seizures mixed in) until February 2013 when I had a Grand Mal. Then another Grand Mal in April 2013. I was put on a 2nd anti-epileptic medication and so far this medication has kept me from having any more Grand Mal seizures! :D

*I continue to struggle with my partial complex seizures monthly. On average, I might have anywhere from 5-10 seizures a month it just varies.

*On April 9, 2014 I had surgery at the University Hospital Cleveland to place 20 depth electrodes. Once surgery was complete I also had surface electrodes placed and was monitored for 2 weeks to collect data on my seizure activity to understand exactly where in my brain they are coming from and how best to move forward with treatment. During this testing I was also tested with electrical stimulation to see if I might possibly respond well to a Deep Brain Stimulator… Sounds well, bionic?

I did really well during the testing- enough for the Dr.'s, JW and me to believe that this could be the right treatment for me.

SO… on June 2nd I am going back to Cleveland to have the DBS implanted! We got the FDA go ahead for me because they definitely want more people to have the stimulator for Epilepsy because the more people that get it, the more data they can collect on how it works for those with Epilepsy. We are very comfortable with this option because the surgery itself is less invasive than what I've already had done and having the device is completely reversible-unlike some other surgical treatments for Epilepsy.

This may be the piece of the puzzle we've been waiting for in my Epilepsy journey but I want to say that even if this device works for me and I never have another seizure I will still think of my self as an Epileptic because it is part of how I've been created-and there was a beautiful plan in that. Throughout all of the turmoil and frustration of this-I can be thankful for it. My journey has brought me to so many places of learning new things about myself and God. He is powerful and His plan is good; we have nothing to fear when we place our lives under his care.

Thank you again for all your prayers and support! JW, Anders & Joline and I are so so thankful for it. We have been enveloped in such great love for these past few years-It's overwhelming.

Blessings friends, -CW *OK I have to add something to this post because I'm getting a lot of questions due to a recent procedure done at our local hospital Spectrum Health Grand Rapids, MI. Maybe you saw the paper this week and readthis story? Indeed, Spectrum Health is one of 10 hospitals approved by the FDA to implant a new device that also gives stimulation to the brain called the RNS device. Here's how FDA approval works both for this device and for the DBS, which I am getting:

- A device is approved for "implantation" by the FDA and the approval goes to a select # of hospitals or Dr.'s who have worked closely to create, prepare, and investigate the ins and outs of the particular device. In the case of the RNS there are 10 hospitals approved to implant.

I am not certain of the exact number of hospitals who are approved to implant the DBS.

- When a person gets a device that is only FDA approved for implantation, the device is still under the "test" phase and all of the people who have the device will have their results recorded to prove to the FDA and the team of creators whether or not it should be given formal FDA approval to be used in mass for everyone with a particular diagnosis.

- Once a device is given the formal FDA approval, Dr.'s everywhere will be trained how to implant these devices and patients will not have to go to just the small group of hospitals approved at first for implant because all hospitals will be allowed to implant at that point if they have the correct training and tools.

SO the questions I've been getting most are what is the difference between the two and why can't I have the one they implant at Spectrum Health?

-First, the RNS device is implanted directly in the brain and is focused on one specific location. The DBS is implanted in the chest (like a pacemaker) with wires under the skin that run up into both my right and left temporal lobes to stimulate simultaneously.

-Second, the RNS is a reactive device that only stimulates once it detects seizure activity. The DBS stimulates continuously to stop seizure activity and the level of electrical stimulation can be adjusted if the patient's Neurologist feels he or she needs more to stop seizures from starting.

-Finally, I am not sure about RNS but I know that with the DBS it is completely reversible. Because it is something that is NOT implanted directly in the brain it is a very non-invasive surgery and if after some time the team of Neurologists does not feel it is improving the patient's situation the DBS can be completely removed without having to undergo major brain operations.

I hope this clears up some of your questions and helps to give you a new understanding of the awesome technology that our medical teams are coming up with to help us-not just in the field of Epilepsy but in so many fields. Great technology is being advanced and improving people's lives every day and it is certainly something I am thankful for!

2 comments:

This is such wonderful news Christina! Continuing in prayer for you all :) You have come quite a long way in this journey and I can easily see you being a huge inspiration and comfort to others with epilepsy. Stay strong in God. You are so awesome!